Social Media Advocacy Tips

How does a “#” work?

On Twitter, Facebook, Instagram and LinkedIn the pound sign (#) turns any word or group of words that directly follow it into a searchable link. This allows you to organize content and track discussion topics based on those keywords. For instance, if you want to post about Rare Disease Week on Capitol Hill, you would include #RareDC2023 to join the conversation. You could then click the hashtag to see other posts on Rare Disease Week on Capitol Hill.

How do I ‘mention’ someone on Twitter, Facebook or Instagram? “@”

Many Congressional offices have Social Media accounts to keep in touch with constituents. If you know your legislator’s handle, you can mention them in your post about #RareDC2023 using the “@” symbol before the name. If you don’t know your legislator’s Social Media handle, check his or her official website.

Tip: Look for a blue checkmark on their Twitter/Instagram account to make sure their account’s identity has been verified.

Before your meeting:

Create a post tagging the Member’s office and the issue you will be talking about, for example:

“We are excited to meet with @dorismatsui for #RareDC2023 to talk about ways to bring more treatments to #Raredisease patients.”

This is a good way to introduce yourself and your issue to the staff. This will add a face to the upcoming meeting and will help them remember you.

During the meeting:

Ask to take a photo, preferably towards the end of the meeting. Write down any notes that might make for good tweets or quotes for your social post.

After the meeting:

Post your picture with a thank you note on Twitter, Facebook, Instagram or LinkedIn re-emphasizing the ask or any key points you discussed during the meeting, for example:

“Thank you @dorismatsui for joining the Rare Disease Congressional Caucus and supporting #RareDisease legislation! #RareDC2023”.

Share Your Rare Experience

Share your Rare Disease Week experience and include how has RDW changed your life or if new to the event, why are you attending? Include #RareDC2023 for a chance to win a $100 Gift Card of your choice!

Tip: Be Creative! #RareDC2023

SOCIAL MEDIA LOUNGE

Stop by our social media lounge for expert tips and support to boost your impact as a rare disease advocate.